Need prayers

[diamondfan]

Maisie, I spoke to my girl friend whose son has Fraxa and she told me some things I thought I would pass along to you. She is a non affected carrier of the gene, so she passed it on to her son, but she is not affected. She said that while girls can have it, what tends to happen is that since a female is two X chromosomes, what happens is that one X is weaker but there is another X to compensate for that. So a girl who is affected might show very minor signs of the syndrome and it might not be obvious at all to others. She has three kids, the first was affected and the other two were not, which is great because normally once you start passing the gene it is a likelihood all children that follow will be affected. If a male is a non affected carrier and has kids, the issues are slightly different. Since the male determines the sex of the baby, if he fathers a boy it is a non issue since he gave a Y chromosome, not an X. If he has a girl, he has contributed an X, which might be affected, but again, having another X makes the resulting symptoms very different. So do not assume your "symptoms" are at all related to Fragile X, some of them are just normal personality issues based in other things.

Please do not be tough on yourself. This is a difficult time, but you are so strong. Of course it is scary. My friend went through all of this 14 years ago and now there is much more information and she is very involved in fundraising and research. I hope you are feeling a bit less anxious, I am sure this is a rough time for you.

 

[lumpkin]

Maisy, I''d sure like to hear from you and know how you''re doing. Please post soon with an update.

 

[KimberlyH]

Maisie,

You, James and the rest of your family continue to be in my thoughts.

~Kimberly

 

[Skippy123]

Maisie,
Thinking of you; how are you? Check in when you can please

 

[Maisie]

Hi everyone. Sorry to have been a bit quiet but I think my head fell apart a bit!

I feel a bit better now. I am just taking a day at a time and loving my little boy more and more.

We have an appointment next week to talk to the genetics counsellor a bit more to decide on whether to test my eldest son and also James.

Thank you so much for all your love and support. I don''t know where I would be without you guys.

 

[Joolskie]

Loving your little man more and more is the best thing you can do as a mom Maisie...

Your family is in my thoughts...

 

[jas]

Maisie -- I''m sorry I''m late to this discussion. I am sure that your strength and love will get you and your family through. Prayers of peace and strength to you!

 

[Erin]

I''m sure if there was a way James could know he was going to have this Fragile X, he then would also choose you for his Mommy. You sound strong amidst hearing this heartbreaking news, ready to learn as much as you can so you can help him the best you can, and full of love. These are the three characteristics he''s going to need the most. Lucky James. There are rough times ahead but also so much joy and hapiness and good times. He''s very fortunate to have a Mommy like you to take the best care of him. Your family is in my thoughts.

 

[rainbowtrout]

Hi there, I know I''m a bit late...I''ve been lurking/following your story with your son for awhile. I just wanted to say that while it might not feel like much comfort, there still IS a chance he could be perfectly fine, yes? He might just have mild Aspergers, or maybe he''s just a painfully shy child? I''m not an expert on these things, but just because you''re a carrier doesn''t automatically mean that James has the disease.

 

[TravelingGal]

Maisie, I''ve been following your story too, and although I haven''t said much, I have been hoping for the best.

Stay strong, as you''ve done, and as the others have said, please don''t feel guilty. I hope that this will be a very manageable a minor thing, if he has it. I also thank you for educating us, as I have learned a bit and taken time to read up on this on the web.

Hugs!

 

[enbcfsobe]

Just adding my best wishes...you are such a strong person and care so much about your family. Someone above said James would pick you for a mom regardless of your genes, and I can''t agree more! Things like this affect the whole family, and everyone in your family is so lucky to have you there to support them and fight for them along the way.

 

[Maisie]

Thank you again for the supportive replies. I really do feel better when I read them.

Today we are going to have James and my eldest son tested. I woke up feeling really sick with nerves. James is going to be very frightened by the blood test. My husband says he will take him in as I don''t cope very well with this sort of thing. I don''t feel good about not being there - I feel as his mother I should be able to go for things like this. He will scream the place down. I will probably have to go right outside so I don''t hear him.

 

[phoenixgirl]

Oh Maisie, I''m sorry.

Your husband is sweet to take James in for you. I''m sure the technician/nurse is a pro and that it will be as painless and quick as possible.

Keep us updated.

 

[Ellen]

Date: 7/18/2007 3:13:15 AM
Author: Maisie
Thank you again for the supportive replies. I really do feel better when I read them.

Today we are going to have James and my eldest son tested. I woke up feeling really sick with nerves. James is going to be very frightened by the blood test. My husband says he will take him in as I don''t cope very well with this sort of thing. I don''t feel good about not being there - I feel as his mother I should be able to go for things like this. He will scream the place down. I will probably have to go right outside so I don''t hear him.

Maise, I know how we hate it when our kids are distressed, but just keep reminding yourself that you''re doing this to help him, not hurt him. And kids are resilient, he''ll bounce back in no time.

Maybe you could go for an ice cream cone afterwards?

{{{hugs}}}

 

[ellaila]

best of luck with the testing, maisie -- you''re in my thoughts!

 

[mrssalvo]

maisie,

just wanted you to know i''m thinking of you today. No matter what happens, you are a strong lady and a wonderful mommy and you and your children will be just fine. Try to hang on to all the great accomplishments James has been making recently and that with you as his mommy he will continue to just thrive...please keep us posted..


love ellen''s idea of and icecream treat on the way home

 

[Lorelei]

Date: 7/18/2007 9:31:41 AM
Author: mrssalvo
maisie,

just wanted you to know i''m thinking of you today. No matter what happens, you are a strong lady and a wonderful mommy and you and your children will be just fine. Try to hang on to all the great accomplishments James has been making recently and that with you as his mommy he will continue to just thrive...please keep us posted..


love ellen''s idea of and icecream treat on the way home

Ditto MrsSalvo, every word, hang in there Maise

Thritto the icecream on the way home!

 

[mercoledi]

Maisie,
I hope it all goes well today. Your having fragile X does not mean that your sons have to have it. Even if James is positive he can have a long, happy and fulfilling life. Sending you strength and prayers for this difficult time for your beautiful family.

mercoledi

 

[KimberlyH]

Thinking of you and your family today, Maisie.

 

[Maisie]

Well its all over! What a dreadful day! My daughter (aged 14) nearly fainted when she was tested and James completely freaked out. It took four of us to hold him still. He was so traumatised. I''m so glad thats done.

 

[mrssalvo]

aw maisie, I''m glad it''s all over. how long until you get the results?

 

[lumpkin]

Maisie, I really empathize -- I know how hard it is to take your baby in to have procedures done -- even something like blood drawing. My kids are frightened of all of that, too, and it''s so hard to watch. When my oldest had to get his kindergarten vaccines my husband went. When my youngest had to have all that dental work, my husband went in with him. I''m good for the every day hurts/accidents and my husband is terrible at that. But where I can''t handle procedures for them, he is excellent. Go ahead and lean on your husband for this. That''s why your kids have you both, because where one is weak the other is strong, and together you get it done.

I''m keeping you in my prayers today.

 

[Maisie]

Thank you for such quick replies!

The results should be in a couple of weeks. I think that my eldest son might be a carrier but I really doubt my daughter is affected at all. Hers was just to rule it out really for when she is older and wants a family.

James will probably have full blown Fragile X - we will be very surprised if he isn''t.

I do try to lean on my husband but I am one of those people who believes I should be strong no matter what. I think I am learning a lesson here.

 

[pyramid]

Big hug Maisie. I really feel bad for you all having to go through this just now.

 

[diamondfan]

Maisie, it is great to be strong, but you do need support. I really hope James is fine, but you had to check. I am so sorry for all you are going through, there is nothing worse as a mother than to be afraid for you child. Big hugs to you.

 

[sheena]

Don''t worry Maisie, everything gonna be alright. Don''t be scared to know about the result of your health. You are in my prayers.

 

[Joolskie]

Oh Maisie, what an emotional day it has been for you... your whole family is in my thoughts.

 

[marvel]

Hi Maisie, I'm just reading about your story. I wanted to let you know I'm thinking about you and wish you all the best. You sound like a GREAT mom!! You and James are lucky to have each other. He is clearly a blessing. Hang in there!!

 

[divergrrl]

Oh Maisie honey, I''m sooooo sorry you had such a rough day. It''s gutwrenching when your kids are hurting or scared. It''s also ok to let your husband do some of the heavy lifting, that''s the essence of teamwork...you can''t be everything all the time.

So, forgive me if this is too painful to answer & I understand if you don''t answer, but I feel like I''m missing something(I went back and read the other threads, but no luck). The genetic counselor called you last week because James'' test came back positive or your test did? Why did they have to test him again? at any rate, I wish you nothing but better news than you are expecting, and a brighter tomorrow once you are able to deal with the diagnosis.

You are a wonderful, amazing mother. Don''t ever forget that. James is a beautiful boy & will do wonderful with you two as his parents.

Godbless...

 

[Maisie]

I asked to be tested first. I would have to have Fragile X for James to have it. I didn''t want him to go through the testing just on the off chance he may have it.

My test came back positive. I am classed as pre-mutation (sounds like something from a horror movie!).

James and two of my other children were tested today. My other two children are too young for testing just yet. They will be tested in their teens.